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2008 Patient Support Meeting
July 15-17, 2008
Atholl Palace Hotel
Pitlochry, Scotland

As of June 6th there are 133 total including 50 PCers) registered for the 2008 Patient Support Meeting which will be held in Scotland.

The meeting will again be hosted by Prof. W.H. irwin McLean and Dr. Frances J.D. Smith of the University of Dundee. The site will be the beautiful Atholl Palace Hotel located in Pitlochry which is a lovely area near Dundee, Scotland (see map). If you plan to attend the 2008 meeting, please follow steps 1, 2 and 3.

We can't wait to see you again -- or meet you for the first time in Pitlochry!

Step 1: Pay the meeting fee. Click on the Make A Donation button to the left or mail your check to PC Project, 2386 East Heritage Way, Suite B, Salt Lake City, UT 84109. CONFERENCE FEE:The Conference Fee of £50 or $100 per adult (children under 18 are free) includes three (3) nights at the hotel, plus dinner on Tuesday and breakfast, lunch and dinner on Wednesday and Thursday as well as all conference sessions and events. This is possible inasmuch as Pachyonychia Congenita Project (USA) and Pachyonychia Congenita Trust (UK) are sponsoring the meeting and covering most of the costs. You will receive a donation receipt for amounts over the conference fee and these donations are tax deductible in USA and UK according to applicable laws.Donations for amounts above the required fee are most welcome.

(2) Complete the Registration Form. The registration form provides the meeting reference you will want to provide when you make your hotel reservations.

(3) June 6, 2008. The hotel is fully booked. Please contact PC Project so that we can work with you for hotel accommodations.

Philip Mazzo MEMORIAL scholarship fund for Travel to the Patient Support Meeting.

All scholarship funds have been awarded and the recipients have been notified (the deadline was April 1, 2008.) The checks will be presented to the recipients at the opening dinner and the essays will be shared.

You must also complete the meeting Registration Form (above).

To apply for the scholarship funds, please click here and submit this on-line application. All applications must be received by April 1, 2008. The application incudes an essay of 300 words or less on "My Life With PC: Why I Want To Attend the PC Patient Support Meeting." PC Project will retain the essays and may use these in future publications or publicity. Philip Mazzo's granddaughter has PC and this fund was set up by their family following his death in 2006 and includes donations from many individuals. We are glad to make these funds available to assist those attending the meeting. The PC Patient Advisory Board has recommended that we give special priority to any PCer attending their first Patient Support Meeting and to those who are participating in the IPCRR (PC registry.)

NEWS - GINA Passes

FOR IMMEDIATE RELEASE - April 24, 2008

The U.S. Senate Passes Historic Bill on Genetic Information Nondiscrimination Americans Can Take Advantage of Health Advances without Fearing Discrimination

Washington DC­ April 24, 2008 ­ With overwhelming support the Senate today passed by a vote of 95-0 the Genetic Information Nondiscrimination Act (S 358).  With xx sponsors, the bill is a testament to a strong bipartisan
effort. The Coalition for Genetic Fairness commends the members of the
Senate for its commitment to affording comprehensive protections against
genetic discrimination.

The Genetic Information Nondiscrimination Act (GINA) paves the way for the
responsible use of genetic information while protecting against
discrimination with respect to health insurance and employment.

³We are grateful for the bipartisan efforts of our sponsors in the Senate ­
Senators Edward Kennedy (D‹MA) and Olympia Snowe (R‹ME) as well as the
tremendous support of Senator Michael Enzi (R‹WY).  They are our champions and are making history today,² said Sharon Terry, President and CEO of Genetic Alliance, and President of the Coalition.  ³Fears that genetic
information could be misused hurts individuals, researchers, clinicians, and
associated industries. Today, our fears have been addressed.²

Marla Gilson, Director of the Washington Action Office of Hadassah, said,
³Just 10 years ago, only 100 genetic tests existed.  Today, that number has
grown to over 1,000 and everyday these tests are helping diagnose thousands of health conditions.  Given the Jewish community's historical experiences with genetic issues, we worked hard to see that this bill was passed.²

The Coalition has worked for thirteen years toward the passage of
legislation to eliminate the misuse of genetic information.  Discrimination
on the basis of genetic information had led individuals to shy away from
genetic testing that could help them manage their health proactively.  It
also has caused many to opt out of clinical trials for fear that their
genetic information would be used against them. This lack of participation
has slowed the research and development of treatments and beneficial drugs.

"We now have a huge task ahead of us.² said Kathy Hudson, director of the
Genetics and Public Policy Center at Johns Hopkins University, ³to make sure that doctors, researchers, and the public are aware of the new protections GINA provides."

Just as the House of Representatives did when it passed GINA in April 2007,
with 224 cosponsors, S.358 protects Americans from discrimination by health
insurers or employers based on genetic information by:

·     Prohibiting group health plans and issuers offering coverage on the
group or individual market from basing eligibility determinations or
adjusting premiums or contributions on the basis of genetic information.
They cannot request, require or purchase the results of genetic tests, or
disclose genetic information.

·     Prohibiting issuers of Medigap policies from adjusting pricing or
conditioning eligibility on the basis of genetic information.  They cannot
request, require or purchase the results of genetic tests, or disclose
genetic information.

·     Prohibiting employers from firing, refusing to hire, or otherwise
discriminating with respect to compensation, terms, conditions or privileges
of employment. Employers may not request, require or purchase genetic
information, and may not disclose genetic information. Similar provisions
apply to employment agencies and labor organizations.

The bill goes to the House, and is assured of passage there as early as next
week.  The White House has signaled its willingness to sign GINA into law.

[NOTE: PC Project is a member of The Coalition for Genetic Fairness (an alliance of advocacy organizations, health professionals, and industry leaders working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation) and supported this bill.]

PC PROJECT PAST EVENTS
Click on the links below to see a report of each past event. Those who are participants in the IPCRR (patient registry) can view video and slide presentations from the meetings at the IPCRR Patient Participants site which is accessible from a link at the top of the Patient Message Board. If you have returned your Consent Form and Questionnaire, you may access this special site as our way of saying 'thank you' for your participation in the registry. If you forget your username or password for this special site, please send and email and request this information from IPCRR@pachyonychia.org.

2006 PC Patient Support Meeting
Dundee, Scotland - July 18, 19, 20, 2006
2006 International PC Consortium (IPCC)
Philadelphia, PA - May 2, 3, 2006
2006 Obstacles to Translation Conference
San Francisco, CA - March 1 - 2, 2006
2005 ASHG (American Society of Human Genetics) Annual Meeting
Salt Lake City, UT - October 26-29, 2005
2005 PC Project Patient Support Meeting (PSM)
Ft. Erie, Ontario [Niagara Falls] - August 25-27, 2005
2005 International PC Consortium
St. Louis, MO - May 3-4, 2005
2005 NIH NORD Regional Workshop
Phildadelphia, PA - Jan 28-30, 2005
2004 PC Project Patient Support Meeting
Dundee, Scotland - Sep 4-6, 2004
2004 PC Project Patient Support Meeting
Kansas City, MO - Jul 2-4, 2004
2004 PC Patient Discussion Meeting
Salt Lake City, Utah - May 5, 2004
2004 PC Project Research Grant Award Presentation
Providence, RI - Apr 28, 2004
2004 Symposium
Park City, Utah - February 2004

ORGANIZATIONS

We will list here links to organizations and sites which may be of importance to PC Project, PC patients and physicians, scientists and researchers interested in PC and related disorders. Check these websites for a list of activities and events for each organization.

PC Patients in France have formed a support group for PC called Le Coeur au Pied. This is such a wonderful achievement. This group works closely with PC Project to enable patients to join the International PC Research Registry.

The American Skin Association, founded in 1987, is a "volunteer-led health organization dedicated—through research, education and advocacy—to saving lives and alleviating human suffering caused by the full spectrum of skin disorders." 

Dystrophic Epidermolysis Bullosa Research Association is a voluntary, non-profit organization dedicated to finding a cure for Epidermolysis Bullosa (EB) and related disorders.

Debra-internation.org (covers issues of general interest)

Debra.org.uk (Debra in the UK is a highly active and effective charity)

Debra.org (Debra in the U.S.)

The Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.) was founded January 2nd, 1981 as the National Ichthyosis Foundation and changed in 1989 to include other related disorders.

GeneSkin is a website funded by the European Union. The site is dedicated to providing quality information on rare genetic skin diseases.

Genetic Alliance is a "coalition of hundreds of genetic advocacy organizations, health professionals, clinics, hospitals and companies." The organization seeks to empower individuals and advocacy organizations to help better the lives of individuals and families living with genetic conditions.

HS-USA became a 501(c)3 charity in May 2003 and was founded for the promotion and facilitation of research into the causes, treatments and cure of Hidradenitis Suppurativa. [Some persons with PC also have HS.]

National Foundation for Ectodermal Dysplasias is a non-profit organization founded in 1981 to provide service to those with ectodermal dysplasia (ED) syndromes which include a group of about 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby. The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. PC is listed as one of the 150 ED syndromes.

National Organization for Rare Disorders was established in 1983 and is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them